The Road to Home... and an Update

A week or so ago, I asked one of our favorite doctors the question we've been wanting to ask for quite some time... "So, what exactly do we have to do to get out of here?" I'll list the criteria below, and then give you an idea of where Evelyn and Sophie stand with each of them. I'll also add that we are told these are STRICT criteria, and that discharge can and will be delayed if one of these is suddenly no longer met.

1. The girls need to maintain their own temperatures in an open crib, as opposed to the warmed isolettes they were originally in.
2. The girls need to be at "full feeds," which is a certain amount of milliliters of breast milk every 3 hours based on their weight. Currently, Evelyn's full feeding volume is 45 mL (1.5 ounces). Sophie's is a little bit lower because she weighs less, but I'm not exactly how much since she isn't quite there yet. They need to be tolerating these volumes of feedings for a length of time before being discharged.
3. The girls need to be "nippling" (drinking a bottle or nursing the full feeding amount) for every feeding for two days straight. That is 16 feedings. If they fail for any feeding, the clock starts over.
4. The girls need to be off caffeine for 7 days. They were put on this medication soon after they were born to help "remind" them to breathe and decrease their alarms.
5. Without caffeine, the girls need to be alarm free for 5 days straight. An alarm occurs, for example, when the girls "forget" to breathe for enough time that their oxygen gets low and their heart rate drops. If they have to be stimulated by us or the nurse to remember to breathe, it counts as an event, and the clock starts over. If they quickly start breathing again on their own, it doesn't count. If the girls continue to have alarms, there is a possibility they could be discharged and have to continue taking the caffeine daily. We would then have to have them on a monitor at home while they are sleeping.

Today, Evie hit the 5 lb. mark, weighing in at 5 lb. 1 oz.! She is, and has been, maintaining her temperature like a rock star in her open crib. She has been at her full feeds for quite some time. She is nippling about 3/4 of her feedings. She has been off of caffeine now for 4 days and has had no alarms that require stimulation! This all translates to some very exciting news: Evie is almost ready to come home! All she needs is 3 more successful days off of caffeine and to nipple for 48 hours straight. We and the doctors are pretty confident that this will most likely occur before the end of next week. We are so excited that, by this time next week, we may have a baby at home!! We even brought her car seat in to the hospital so we are ready to take her home when it's time.

Sophie weighs 4 lbs. 8 oz. as of tonight. While she has a few issues to work through, we are confident that as soon as she gets her feeding intolerance under control, she will catch up to Evie quickly. I'll talk about her feedings last, since I kind of have a lot to say about it. As of tonight, Sophie is in an open crib, and she has been maintaining her temperature wonderfully. She does a great job of nippling, but since she's been on and off feedings so often, she needs a little more practice! Sophie is still on caffeine because she tends to have more alarms, especially when she's not feeling well because of her feeding intolerance, but again, I think she will do very well as soon as she does better with her feedings. (Also, none of her alarms require any stimulation, which is a very good sign.)

OK, so here's the latest on Sophie's feeding intolerance/belly issues. As I mentioned in my last post, we have gone through a cycle of starting and stopping feedings several times, with some scary moments in between. This happened again on Tuesday, for the fifth time since we've been there. Luckily, they immediately checked labs, which all looked great, so we didn't have to worry too much about a belly infection, but she was obviously uncomfortable and something was wrong. The doctors stopped her feedings and decided to do a test that would check for any blockages in her intestines. If she did, she would most likely need surgery to repair whatever they found. I'm happy to say that this test looked completely normal! It's a little frustrating, because we still don't have any definite answers, but we are so thankful she doesn't have anything serious enough to need surgery! The doctor yesterday told us there are a couple of things that could be going on, and we will test for those if we need to, but he believes that it's very likely this all has to do with her prematurity and the infection she had a couple weeks ago. In that case, she just needs to grow out of it. Her feedings were restarted yesterday at a small amount and will, again, be advanced slowly. Today, she was getting 10 mL every 3 hours... Tomorrow, it will most likely be increased to 15. So far, she is doing great, and even took a few bottles today! If you're praying for our girls, please pray that Sophie will finally begin tolerating her feedings so she can continue making progress toward coming home.

We are so thankful that Evelyn is nearing the end of her NICU stay and hopeful that Sophie won't be too far behind. Please pray that our girls will continue to grow, maintain their temperature, tolerate their feedings, and do well with taking the bottles and, eventually, nursing. Pray that they will stay healthy and not catch any more infections (especially Sophie as she has a PICC line, which can put her at risk for infection.) Pray for Nate and me as soon we are going to have to make the adjustment to having one baby in the NICU and one at home, and later to having two babies at home! It is exciting but scary to think of having two babies at home without monitors to assure us that everything is okay.

Thanks for all your prayers!

Nate, Sara, Evelyn, & Sophie